After 19 years of on and off symptoms, they last 5-6 years being progressively worse, they are gone! I had my first surgery 3 weeks ago today! I have to say it is very strange not to poop!
Some more about Kira:
As a mom, wife, sister, and teacher, I can not wait to be ME again! I don’t think we, UCers, realize how much we put ourselves through to try to maintain normalcy for our friends and family. But once I started telling my family I was going through with the surgery all the comments of my strength and persistence came out. I don’t even know what normal is!
No UC symptoms! I am just learning all about “Bob”, my stoma, and all the supplies that go with having an ileostomy. And it’s not as scary as I thought it would be.
Kira’s Update: Surgery No 1 Complete and it was a Good Choice
I woke up at 4 am on Monday Sept. 22nd because I had to shower with a special soap before surgery. We arrived at the hospital at 5:30 am and I couldn’t believe how awake and ready I was. Pre-Op started about 6 with multiple nurses coming to ask all kinds of questions, start IVs, and ask more questions. I had this strange feeling of peace and excitement – although I could tell my husband was not as at peace as I was. I think it is easier being the one going through this than the loved one. I was given the option of having a nerve block on each side of my abdomen to help with the pain over the first 12 hours, and yes I took it. After that, one more kiss and “I love you” and I was wheeled away. I was hoping to see the robot since my surgery was robotic assisted, but it was all closed up still. I remember scooting onto the other bed and being strapped down. Next thing I was waking up to my husband’s relieved face and the best r ecovery nurse ever! Pain pumps are a wonderful thing!
I came home from the hospital on Friday, day 5. That weekend was extremely difficult – especially taking a shower! OMG – I thought I was going to die after the first one, but it felt so good! I still had a drain and I was trying to use the minimum amount of pain meds (not a good idea- use them!!). Getting in and out of bed was not so fun either. I dropped 7 pounds in my first 3 days home, apparently that is normal. I wasn’t used to eating since I avoided it most of the time to control my symptoms while I was at work – teachers can’t just run out of the room anytime. I have a whole new list of foods I can eat ( and a new list of no-no’s too)
My post-op appointment was a turning point for me. It was my first “day out”. I dressed in “real clothes, put on makeup, etc. Out came the drain – that’s an experience! The best part was when we learned the pathology of my colon. Some of you may remember I had a fear that they would tell me my colon was fine, especially because I was really at my best when I went into surgery. Well, It was so swollen they had to enlarge the ostomy hole to get it out of my me. They also had it tested for Crohn’s because it has some signs of that when they removed it. That came back negative and so did tests for cancer – YEAH! But the crazy part is the pathology said my colon was abscessing (close to perforating)! My surgeon said they don’t get that diagnosis and I am very lucky it didn’t! I have had this feeling of well being since day 1 – maybe it is because that toxic colon is out of my system. I hope so. The next best part of the day was going to lunch a nd not caring where the bathroom was! Oh and the hour long drive home – and not worrying if I was going to need a bathroom!!
So now I am very antsy to get back to work and my students, but my brain is way ahead of my body! If I overdue it I pay for it the next day. Those of you who were working out and in gyms by now I commend you! Maybe it’s my age, I don’t know, but I am happy and that’s what matters. And trying all the different types of ostomy bags, wafers, barriers rings, wipes, etc is a bit overwhelming! I think I am just going to pick one and stick with it! Anyone with advice on this – I am open to it.
Surgery number 2 will be in mid December or early January!
I am on my final taper down of prednisone – 10 mg this week – can’t wait to be off of it for good! And a multivitamin for women – that’s it!!
I am terrified of a blockage, so I am careful not to eat the things that will cause one – I was really looking forward to salads and raw veggies, but that’s a no-no for now anyway. Now I just have to remember to eat!
written by Kira
submitted in the colitis venting area
I am a wife, a swim-mom to 3 awesome kids, and a teacher. I was diagnosed with Ulcerative Colitis in 1995. I am throwing in the towel against this disease. My surgical consult is on August 15th